Need Support - Told today I'm on Palliative Care

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nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Mon Jun 10, 2019 6:53 am

Updates:
(1) The hospital is hiring a full-time oncologist in July. :) Finally don't have to see a different onc every three months.
(2) Saw the latest onc (#4 for me in a year) May 30. Long story short he looks up from papers he is reading, asks if we'd seen a surgeon. No, we say, a little confused. Ah, he says. Reads the papers again, making them with a red pen. He looks at us and says: I think you might be a candidate for surgery, and explains the HIPEC surgery to us. Finished with saying we should think about it, and that he, unfortunately is a locum, and is there really only to approve my treatment each time. He recommended we make an appointment with the onc we saw in October rather than wait until sometime in July when the new doctor arrives. We call for an appointment when we get home.
(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)

stu
Posts: 1218
Joined: Sat Aug 17, 2013 5:46 pm

Re: Need Support - Told today I'm on Palliative Care

Postby stu » Mon Jun 10, 2019 8:01 am

Hi ,
I have found that the oncologist generally has a rough idea if it’s operable . Holding out for good news for you .
Your husband is doing a great job too .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

tbt4snow
Posts: 26
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

Re: Need Support - Told today I'm on Palliative Care

Postby tbt4snow » Mon Jun 10, 2019 8:48 am

(3) Saw the onc in Burlington June 6. He showed us the scans from September, January, and the most recent one at the end of April. Things look good :) He agreed that I might be a candidate, referred us to someone at Mass General.
(4) Friday morning I spent quite some tie navigating Mass Gen's phone system to secure a medical record number so the onc in Burlington can send my records to the surgeon there. Now we wait.

I will admit that when the prospect of surgery was "pie-in-the-sky" I was not anxious at all. Now I am quite anxious about it. Hubby said there are only a few options -- surgeon calls and says after seeing records I am not a candidate or I am a candidate. If not, we are not any different than before. If yes, then we likely head to Boston for an appointment. He keeps me grounded.[/quote]

I would recommend you to see Dr James Cusack at MGH for hipec. He was my surgeon for crs/hipec in April. He is the best.
Hope more good news coming your way.
Tina.
DX: CC stage 4/w ovaries & omentum mets in 12/17 49/F
High grade pT3N1bM1b sigmoid Adenocarcinoma colon
MSS-h TMB=16, NRAS-mutant
Lymph nodes: 1/2 left colic; 3/8 regional
12/2017: Exploratory laparotomy & resect of sigmoid & ovaries
Folfox/avastin 12 sessions from 1/8-6/18. 6/18 CEA 2.1
1/19: CT shows peri mets;
CEA: 12/18 5.1, 1/7/19 7.9; 1/15/19 9.1; 1/30/19: 10.6
4/3/2019 CRS/HIPEC after 4 Folfiry sessions...

radnyc
Posts: 411
Joined: Tue Apr 06, 2010 6:32 pm

Re: Need Support - Told today I'm on Palliative Care

Postby radnyc » Mon Jun 10, 2019 6:03 pm

Don't give up! I know, it's easy to just say that, but, there have been many people who have been told that surgery is out of the question, and have become candidates. Not all doctors/surgeons have the same skill and confidence, sometimes it's a matter of looking a little harder. Sounds to me that cytoreduction maybe an option for you, find the centers that are known for this and make and appointment, I'm pulling for you.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

boxhill
Posts: 403
Joined: Fri Apr 06, 2018 11:40 am

Re: Need Support - Told today I'm on Palliative Care

Postby boxhill » Wed Jun 12, 2019 10:07 am

Really glad to read that you are responding to chemo now. I think that there is no doubt that you need to get involved with a real cancer center. It's great that you are consulting with someone at Mass General. I would suggest that if you are going to travel to Boston you might try to get a referral for a consultation at Dana-Farber.

I'm not sure where you live, but assuming that the Burlington you refer to is the one in VT, you should also have options such as Dartmouth-Hitchcock. You really need to be a patient somewhere with better resources.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Sun Jun 30, 2019 7:48 pm

Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Need Support - Told today I'm on Palliative Care

Postby Maggie Nell » Sun Jun 30, 2019 11:12 pm

That's great!
Last edited by Maggie Nell on Sat Jul 06, 2019 2:34 am, edited 1 time in total.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

tbt4snow
Posts: 26
Joined: Sat Oct 27, 2018 3:16 pm
Facebook Username: Tina tran

Re: Need Support - Told today I'm on Palliative Care

Postby tbt4snow » Mon Jul 01, 2019 5:05 am

nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)

Great news. You will be in best hands with dr. Cusack.
If the surgery is moving forward, you might want to ask to see onc dr Clark there to check out a new study that uses vaccines and Keytruda.
I wasn’t able to participate because I found out about it after my surgery and as of now there is no visible tumor to make vaccines from.
Best of luck.
Tina.
DX: CC stage 4/w ovaries & omentum mets in 12/17 49/F
High grade pT3N1bM1b sigmoid Adenocarcinoma colon
MSS-h TMB=16, NRAS-mutant
Lymph nodes: 1/2 left colic; 3/8 regional
12/2017: Exploratory laparotomy & resect of sigmoid & ovaries
Folfox/avastin 12 sessions from 1/8-6/18. 6/18 CEA 2.1
1/19: CT shows peri mets;
CEA: 12/18 5.1, 1/7/19 7.9; 1/15/19 9.1; 1/30/19: 10.6
4/3/2019 CRS/HIPEC after 4 Folfiry sessions...

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: Need Support - Told today I'm on Palliative Care

Postby AmyG » Mon Jul 01, 2019 8:30 am

nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)



That is like two weeks away!!! I'm super excited for you, I hope it goes better than anyone could have imagined.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

Punky44
Posts: 402
Joined: Mon Oct 01, 2018 4:29 pm

Re: Need Support - Told today I'm on Palliative Care

Postby Punky44 » Mon Jul 01, 2019 9:44 am

Yay! Keep us posted.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Fri Jul 05, 2019 6:12 pm

tbt4snow wrote:
nynessie wrote:Guess what I'm doing in mid July? I am heading to Mass General in Boston to see Dr. Cusack! I sent my records and test results and his office called to give me an appointment. :)

Great news. You will be in best hands with dr. Cusack.
If the surgery is moving forward, you might want to ask to see onc dr Clark there to check out a new study that uses vaccines and Keytruda.
I wasn’t able to participate because I found out about it after my surgery and as of now there is no visible tumor to make vaccines from.
Best of luck.
Tina.


I'd like to help cure this beast ... so will ask about this.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)

nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Fri Jul 05, 2019 6:15 pm

Looking for simple directions to Yawkey Bldg (Dr. Cusack) at Mass General in Boston -- we will be starting from Manchester, NH. We know to go down 93, but then things look complicated on google. Hubby would like to try public transportation rather than drive in downtown Boston. I want to get there without problems.
Thanks friends!
Agnes

PS: And directions to return to Manchester, as I've been told there's lots of one-way streets ....
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)

nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Fri Jul 19, 2019 6:26 pm

Monday: Appointment with Dr. James Cusack (surgeon) at MassGeneral. He said there was still too much disease for him to be confident in removing all of it. He called in Dr. Jeff Clark (oncologist) to consult. Left with treatment plan to continue with FOLFIRI, adding Cetuxamab. We agreed to ramp up my treatment to be a bit more aggressive. I would do four rounds (2 months), scan, and return to see both of them at the end of September. Dr. Clark would call Dr. Singh to confer.

Friday: Appointment with Dr. Singh (oncologist, newly hired at my local center). A great first impression. He had spoken with Dr. Clark; told him he needed to review my history. He discovered that I had two biopsies - one during a colonoscopy and one needle-core for the mass outside the colon. The first was KRAS mutated. The second showed KRAS wild. He faxed over the two different results to Dr. Clark on Thursday. At the appointment he explained people could indeed have both types, and I expressed concern over that, asking lots of questions. At end of appointment we had agreed I would skip next week's treatment and have a biopsy repeated on the mass outside the colon. If this new biopsy also came back wild, I would add Cetuxamab. If not, we'd discuss options. Biopsy is sent for next Friday, with appointment with Dr. Singh the Friday following. Next treatment would be Monday after that. I needed to decide if I wanted to add the new drug or wait until the results of the biopsy. Chances are the results will take longer than a week to return.

At 5pm today, my phone rings. It's Dr. Clark calling me. He had not reached anyone at my home cancer center, so he called me. (WOW!) He told me he had receive the information from Dr. Singh, so it meant I was not a candidate for the drug, telling me other options. I told him about my appointment this morning, and we both agreed the best approach would be to continue with the treatment (FOLFIRI only) until the results are back. He would prefer I did not take the drug if I am indeed not wild.

I am seriously impressed with today. I have a new oncologist here who is not only staying for the long term, but who is willing to communicate with outside doctors, and who treats me like an equal in my own care plan. I have an oncologist in another state who not only takes the time to respond to my local doctor, but who takes the time to contact me on a Friday evening.

Now if it wasn't so hot and humid right now. Everyone please enjoy your weekend. :)

PS: We stayed in Manchester, NH. Took bus down to South Station. Took Red Line to Charles/MGH. Yawkey Building is literally at the T-stop. Could not have been simpler. Thanks go to my in-laws for driving to/from Exit 5 for the bus. <3
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)

User avatar
juliej
Posts: 3049
Joined: Thu Aug 05, 2010 12:59 pm

Re: Need Support - Told today I'm on Palliative Care

Postby juliej » Mon Jul 22, 2019 5:39 pm

nynessie wrote:I am seriously impressed with today. I have a new oncologist here who is not only staying for the long term, but who is willing to communicate with outside doctors, and who treats me like an equal in my own care plan. I have an oncologist in another state who not only takes the time to respond to my local doctor, but who takes the time to contact me on a Friday evening.

What a difference the right doctor/cancer center makes! Getting someone who's willing to treat you like a member of a team is a huge improvement. I have a very good feeling about this! :D

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

nynessie
Posts: 18
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Thu Jul 25, 2019 7:53 am

AND THIS IS HAPPENING!

I found out July 22 I will not begin new treatment plan with Cetuximab. I had 2 biopsies - one with sample from the tumor inside my colon, one with a sample from the mass outside my colon. One is type wild and one is mutated. (Not sure which one is which.) Good news is my last CEA was 2.7, and the mass is down to 7.8cm but the small nodules around my abdomen have not disappeared.

So.... over a span of 8 days my life will look like this -- and yes, that is 2 bowel preps in less than a week :|
Appointment with GI is July 31.
Colonoscopy is August 2.
IVC Filer placement scheduled for morning of August 5.
Stoma Mapping is afternoon of August 5.
Pre-op appointment with surgeon afternoon of August 5.
Phone interview with anesthesiology morning of August 6.
Surgery begins morning of August 7.

Add to this:
Husband out of town all next week, returning home to drive to Boston where he'll stay until August 15.
Daughter needs to be picked up from summer job in NH on August 16.
Daughter needs to move in to her college room August 22. She's a freshman, so this is a big deal.

We live 350 miles from Boston.

What are my chances of being discharged before August 15? And going home?

The surgery is major -- CRS/HIPEC -- and includes a complete hysterectomy (ovarian mass), removal of sigmoid, possibly removal of a small piece of liver, placement of ostomy, and whatever else I haven't been told yet. I'm 60, and in good health other than this cancer. Only drug I take is Lovenox/Savaysa as there is one small clot on one lung (hasn't changed since October). I've managed to gain 15 lbs since last June, and can walk a mile in under 30 minutes without breaking a sweat. :)

Right now I am bummed I might miss this part of my daughter's life. I am fine with sitting in car, or whatever, and just watching but really want to be there. If I am not discharged so I can at last go home, I am going to have to go live with my mother-in-law until my husband can come back and get me at the end of July. :|
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)


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